One-Stop Shopping

Last week I experienced health care at its finest in my own peculiar version of one-stop shopping, heading to the hospital for a day of consultations flowing from Psychiatrist to Fellow to Attending Neurologist to Physical Therapist. Now that’s what I call patient-centered care, yours truly the star of the show! With Movement Disorder, one’s neurologist is often the tip of a medical ice-burg floating down a river teeming with doctors and therapists. Why shouldn’t treatment resemble a “power trip” to the mall to score a broad swath of retailers?

Pushing our “main squeeze” to the side, chronic illness ushers in a host of ancillary issues shaping quality of life. We confront side effects from our meds, the practical repercussions of a body gone wild, a seesaw of energy and fatigue…not to mention those emotional highs and lows. Assembling our go-to team requires us to work as our own Offensive Coordinator, searching out appropriate therapies – hopefully with providers who take our insurance – in an effort to quarterback a game plan aimed at gaining elusive yards as we journey up the field. The big “Hail Mary” may lie outside our control but we gun for those small victories.

Getting to the nitty-gritty of my “medical spree,” what a treat to bask in the rays of a professional crew evincing an understanding of a slew of complicated relationships – Dystonia the hub driving the wheel. They proffered care with concern, proactively addressed side effects rather than prescribing recklessly, and showed due respect for the knowledge I contribute…after all, I qualify as my own expert witness! Meanwhile, I enjoyed a bout of medical room service where the farthest I strayed was a jaunt down the hallway to display my decidedly Dystonic swagger. If only I could coax this symphony of place and time out of follow-up therapy appointments. When health care gets things right, it’s really rather incredible how much “simpler” our lives could be.

Wow! What a great dissertation on medical care gone RIGHT! So here most of us fail that achievement, and receive at best a patchwork of mediocre, sub-par sure to keep us coming back for more. Communication seems key, and of course the providers interest in keeping up with the latest research and treatments. Unfortunately geography and luck have more to do with our care then it really should.
I’m so happy Pamela that you are getting the good stuff. No one deserves it more.
Mike

Mike, Thank you for such a lovely thought. Unfortunately, the health care system is often steeped in horror stories. Indeed, I have more than a few myself. I’m so grateful for the care I receive from a stellar neurology team and wish everyone could receive access to caring and comprehensive care. -Pam-

Pam, as usual, your description is happy and positive, but you have also said exactly how the care is and how she should be.
I have the luck that I live in a conurbation where dystonia doctors are accessible within 1 hour. And these are good experienced doctors. However, this is not also everywhere in Germany in such a way.
Unfortunately, there are only few therapies which relieve the discomfort at least a little.
Some affected person from our self-help group take part in a study (for CD) to find out whether Taping is helpful. I will report about the result.

Franz, Always so lovely to hear from you my friend. I am thrilled you enjoy excellent neurological care. Unfortunately, many people in the US struggle with accessing experienced Movement Disorder doctors, particularly those not near major cities. It’s unfortunate that the health care system can be such a muddle, every patient deserves to be connected with proper treatment. Truly, health care is a work in progress. -Pam-

This is so impressive, Pam! I just checked out the website, and noticed (among so many other things) that they even include a ‘patients helping patients’ section that list blogs like yours. It’s encouraging to know that there is such a model of truly patient-centered care, and it’s great that you’re experiencing it. Since it’s not practical for me to travel regularly from Boston, maybe I need to do a little advocacy with the hospital where I receive my care…

Monica, Always lovely to see your comments. In my view, high quality multi-disciplinary care is a necessary objective for the majority of patients and certainly for those with movement disorder. As of for your idea, it’s so important we as patients make our health care needs known. Hopefully, the more we speak, the more the health care system will listen. The very best to you. -Pam-

Pam, it is so refreshing to read this!It is unfortunate that , some of us as noted, are geographically held to the care we can access. I do go 500 miles to Houston Medical center, if needed, but my new Neurologists happens to know my specialist in Houston, so that helps me a bit, and is a blessing. Hope you are having a wonderful day! Karen

Karen, Thanks so much for your comment…and also for following my blog. Glad to hear you’ve found a Neurologist who isn’t quite so far away as this certainly makes life easier…as you say, such convenience is a blessing. Have a wonderful week yourself. -Pamela-

What a great posting, Pam. Regrettably we do not have regional Neurology Wings that are effective of this one-stop shop. I am waiting for another trip to London with the National Hospital of Neurology and Neurosurgery at Queen’s Square, as the newly built Neurology Wing here in Oxford, fdilled with incompetent fools. My estimated queue could be well over a year, which places any improvements as a desperate yet soul destroying exercise in patience.

I am thrilled to know that your efforts are focusing on the entire patient, not just medicate with DBS and hope that it is successful. Thank you for your inspiration! Gary

Gary, I wish the multi-disciplinary model was more widespread as there is a true need for such care in Movement Disorder – and also a host of other chronic conditions. As for those grueling waits to see specialists, they’re one of the travesties of health care. I can only hope your appointment arrives as speedily as possible. It has been my pleasure to get to know you and your friendship has been an inspiration to me. xxx -Pam-

Cheryl, I encourage anyone from Australia to give you a shout out. Unfortunately, I don’t know of anyone with Dystonia in Australia or even any resources to point you towards. Are there any foundations or societies there that could possibly be of assistance and connect you with others? If I come across any information, I will be sure to let you know. I’ve also posted your question to my blogger group. -Pamela-

Lisa, I am so thrilled you found my blog and this comment string. It’s absolutely lovely of you to take the time and effort to contact Cheryl and refer her to a local support group. The potential for connection and information sharing make the Web an invaluable resource for those living with disability and chronic illness. It’s all about an accumulation of efforts like yours. Hope you are enjoying the weekend. -Pamela-

Thank you Pamela. It’s my mission to bring together Dystonia sufferers from Australia together so they no longer feel alone. Yes thanks I have had a nice weekend it’s now 1am Monday morning so time for bed. I hope that you are having a lovely weekend too Pamela 🙂

Highlights from the Bronx Zoo Walk on Oct. 4, 2015

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Email: ps@dystoniamuse.com

What seems like a lifelong experience with Dystonia began with a "mis-step" when I was 8-1/2. Dystonia may have staged a coup over certain body parts but my heart and soul remain firmly my own. I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health activist.